Earlier this year, I found out that I am BRCA 1 +.
If you haven't been following my journey (blog/podcast) then you are probably like DA FUCK is BRCA? Or at least, that's how I was when I first heard of it.
In the past month, I've had so many of you reach out. I've heard stories of those of you who are BRCA + too, those of you who are battling breast cancer or are survivors, and a hell of a lot of messages from those of you who didn't even know it was possible to get genetically tested for something like this.
So I figured I'd put together some facts & figures for you guys based on my own personal research and what my doctors have shared with me. So please do your due diligence on your own and speak to your doctors to discuss if this is the right path for YOU.
THE FACTS
SO, WHAT IS BRCA?
BRCA 1 and BRCA 2 are human genes that produce tumor suppressor proteins. When either of these genes is mutated, cells in the body are more likely to develop additional genetic alterations that can lead to cancer.
Inheriting the BRCA1 or BRCA2 gene increases the risk of female breast and ovarian cancers (although they have also been associated with several additional types of cancer). People who have inherited mutations in BRCA1 and BRCA2 tend to develop breast and ovarian cancers at younger ages than people who do not have these mutations.
HOW DO YOU INHERIT BRCA?
A BRCA1 or BRCA2 mutation can be inherited from someone's mother or father. Each child of a parent who carries a mutation in one of these genes has a 50% chance (or 1 chance in 2) of inheriting the mutation.
When I was in college, my dad got tested and found out that he had the BRCA 1 gene. Most women my age that I've spoken to who know about the gene were urged to get tested after their moms or close female relatives were diagnosed with breast or ovarian cancer. I've only met one other woman (shoutout to my gal Ashley who just bravely went through a preventative double mastectomy) who has a similar story to mine. So if you have any history of breast or ovarian cancer on either side of your family, you may want to consider getting tested.
WHAT ARE THE RISKS INHERITED WITH BRCA?
This varies depending on whether you have BRCA 1 or 2.
For BRCA 1:
- 60-80% risk of developing breast cancer over lifetime compared to the 12% general population risk.
- 34-44% risk of developing ovarian cancer over lifetime compared to the 1-2% general population risk.
- 2-3 % risk of developing pancreatic cancer over lifetime compared to the 0.9% general population risk.
- Increased risk in male breast and prostate cancer
For BRCA 2:
- 50-70% risk of developing breast cancer over lifetime compared to the 12% general population risk.
- 12-20% risk of developing ovarian cancer over lifetime compared to the 1-2% general population risk.
- 20-30% risk of developing prostate cancer over lifetime compared to the 16% general population
- 7% risk of developing male breast cancer over lifetime compared to the 1.10% general population
- 3-5 % risk of developing pancreatic cancer over lifetime compared to the 0.9% general population risk.
- 3-5 % risk of developing melanoma over lifetime compared to the 1-2% general population risk.
*stats pulled from the National Society of Genetic Counselors
WHEN TO CONSIDER GENETIC TESTING
- You have a relative with a BRCA 1 or BRCA 2 mutation
- Family history of breast cancer diagnosis at an early age (aka before 50 years of age)
- Family history of ovarian cancer
- Multiple generations with breast and/or ovarian cancer
- Family member has had multiple primary cancers
- Ashkenazi Jewish ancestry (this one took me by surprise! I have Ashkenazi Jewish ancestry on both sides of my family)
FAVORITE RESOURCES AND SUPPORT
The Bright Pink Foundation -- A FANTASTIC resource to help you assess your risk and find a local group in your area for support. They also have a beautiful program called the Pink Pal where you get paired up with someone to help you navigate the process once you've found out you are BRCA +
The Breasties -- a nonprofit organization dedicated to supporting young women affected by breast and ovarian cancer through community and friendship. They host events, meetups and retreats and I've had the pleasure of getting to know Paige, the founder, and could not be more on board with what she's doing and the community she's building. #breastie love!
Facing Our Risk of Cancer Empowered (FORCE) -- education resource for more information and studies. Great resource!
So there you have it!
Remember just because you KNOW this information doesn't mean you have to get tested. I waited 5 years and while in some ways I wish I had known sooner, I'm also grateful I waited because even a couple of years ago, I wasn't mentally ready to handle everything.
And if you ever need support, love or encouragement along your journey, know that I am always just a message away and I would LOVE to connect with you!
Xo Amanda